Cover Story

Life worth living

The January 22, 1973, Roe vs. Wade ruling has been a death sentence for 30 million-plus preborn infants in the United States. For 24 years babies have died for any reason and no reason. But in the 1990s, with the development of new genetic tests that can more safely and less expensively diagnose genetic disorders in utero, many young humans are at risk for one very specific reason: They have Down Syndrome.

Issue: "Down Syndrome = Death Sentence?," Jan. 18, 1997

from St. Louis

Neighbors were stuffed into the Barker family's suburban St. Louis home like candied fruits in a thrice-given fruitcake. It was the Barkers' traditional Christmas open house, part of their effort to preserve the neighborhood "feel," the cohesion that has helped cushion the world for their daughter, Jennifer.

Indeed, 27-year-old Jennifer was the hot topic of the night: "Where is she?" "Will she be back soon?" She was out with friends, her parents explained, to the obvious disappointment of their neighbors.

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When she finally arrived, the bright, happy young woman with a smile for everybody was greeted like a celebrity. But Jennifer-like others with Down Syndrome-hasn't always been so welcome.

Peggy was warned when she was pregnant with Jennifer that her age-40 at the time-increased the odds that the baby would be born with Down Syndrome. Although it was three years before the landmark Roe vs. Wade decision, Peggy was told by her doctor that Down Syndrome was medical justification for an abortion.

"I told him never to use that word to me again," says Peggy, a nurse at the time who knew of her increased chance of having a baby with Down Syndrome. "We knew God would equip us."

When Jennifer was born, before she was a few hours old, the doctor suggested the family find a "home" to put her in. "He talked about the stress having her with us would place on our four boys, and the embarrassment to them she'd cause," says Peggy. "The pediatrician walked up and down the hall with me, telling me the statistics: that Jennifer would be more likely to have heart problems, leukemia, so on. But we stood our ground, because we knew immediately the Lord had blessed us."

Life (and death) has changed since then. The Barkers had to wait; today, parents can find out almost immediately whether the child they're expecting has Down Syndrome. But they rarely see the blessing the Barkers have seen in Jennifer. That's because mounting medical, economic, and social pressure leads parents to abort 9 out of 10 preborn babies with DS. Though children with DS are apt to lead long, rich, happy lives, the "normal" world has decided those lives aren't worth living.

The new social-policy scythe is the alpha-fetal protein (AFP) test, which according to some doctors can detect 98 percent of birth defects, including the most common one, Down Syndrome. This test is already routine in most states, for most pregnancies. Its predecessors, amniocentesis and chorionic villis sampling, are invasive and more than slightly dangerous. Both involve gathering cells from the amniotic fluid (amniocentesis) or from the placental tissue (CVS). Both tests trigger miscarriages 1 to 2 percent of the time. AFP carries no such danger, and it's cheap: Compared to $1,000 for an amniocentesis, the AFP is only $100 per test. But you get what you pay for: AFP tests result in a high number of false positives.

Two new tests promise to make genetic screening even easier, more accurate, and nearly universal. One test is now being tried in the United States. It involves drawing six ounces of the mother's blood, which contains a few precious red blood cells from the developing baby. Those cells, present at the rate of one in a billion, can now be tagged, separated, and studied.

A second test, now being tried in Great Britain, is a simple urine test, which looks for traces of chemicals left over when the hormone hCG breaks down. In a woman pregnant with a Down Syndrome baby, this hormone is usually present at twice the normal level. Eventually, this test could be more accurate and less expensive than even the fetal red blood cells test. Both will likely be used to screen for defects; a positive result would be followed by the traditional amniocentesis.

Robert Miller, chairman of the division of obstetric anesthesia at St. John's Mercy Medical Center in St. Louis County, acknowledges that the new technology can be used for evil purposes, but stresses it can be used for good, too. "I've delivered the news to parents that the tests show their baby has Down Syndrome," says Dr. Miller. "The first reaction is always shock. They grieve, because it's the death of a dream. Everyone wants the perfect child."

That's the opening Dr. Miller needs to share with parents the reality that everyone-even babies with Down Syndrome-are created in God's image.

"The only perfect baby ever born was Christ," he tells parents. "The rest of us are all imperfect. It may be something visible, like Down Syndrome, or it may not, but we all share in the imperfection. But we're seeing the wrong side of the tapestry. God sees the whole thing, and he knows it's beautiful."

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